The New Normal is Not For Me

I hate the term “New Normal.” I hate it with all of my being. The “new normal” is something that many people talk about. It refers to what your life is like after cancer. Oncologists, psychologists, radiologists, (basically all the “–ists”), as well as fellow cancer survivors, refer to the “new normal” on a regular basis. Every time I hear the term, it makes my skin crawl.

The “new normal,” is an oxymoron to me. It’s like boneless ribs, a calculated risk, or alternative facts. By definition a “new” normal isn’t normal. It is, however, a new reality.

Speaking as a cervical adenocarcinoma Stage 2 survivor, here are some of the things that people (both doctors and fellow Cervivors) have deemed as a “new normal” after cervical cancer treatment.

Loss of muscle and strength

Due to chemo, radiation and multiple abdominal surgeries I have little to no core strength any more. I can’t carry the same things that I was able to do prior to cancer (including heavy grocery bags) or do the same cardio that I was able to (I still become winded if I talk and walk upstairs at the same time). Most recently I developed severe lower back pain, which is due to my psoas muscle having been cut 5 times in the past 18 months. I have been told that this is “just a side effect” of the lifesaving treatments and surgeries that I endured over the past two years. I am not ok with this. I want to be able to move the way I did prior to cancer, or at the very least, without pain on a daily basis. This is my new normal? No thank you.

Sexual dysfunction and discomfort

Treatment for cervical cancer often involves radiation or a hysterectomy (or in my case, both). Both of these cause scar tissue which can build up in the vagina and make sex uncomfortable or in some cases impossible. Women are told to use dilators to keep their vaginas open, but quite often sexual discomfort is just deemed as part of your new normal and something that you and your partner need to work around. This reality should never be considered normal.

Bladder/Bowel Issues and Ostomy Bags

Because cervical cancer patients receive radiation and surgery so close to their bowel and bladder, quite often these tissues are damaged beyond repair, and in some cases, cancer spreads to these areas. I have undergone bladder reconstructive surgery, which thankfully was a success, so I did not need to have ostomy supplies, such as an ostomy bag (I have been spared this “new normal” for now. However, I know many women for whom this is not the case.) Unfortunately, the surgery has left me with a smaller and more sensitive bladder. I have to pee all the time…even when I have just gone to the bathroom. Not normal.

Anxiety (over every small pain, out of the ordinary symptom and particularly before scan appointments).

After having cancer, every small twinge of pain, every weird mark on my body, every unexplained symptom becomes possible cancer. Eye Twitching? Retinal Cancer. Headache? Brain Cancer. Bruise I don’t remember getting? Blood Cancer. It is exhausting being this worried all the time. But once your seemingly healthy body receives a diagnosis of cancer, you can’t help but think that your body will betray you again. And now that you know what this betrayal means in terms of treatment, the anxiety becomes even worse. Being afraid of your own body is my new reality. But it is not normal.

As I write this I worry that people will think I am not grateful for the lifesaving treatments I received. I am eternally indebted to my oncologists and radiologists, urologists and surgeons. They did what they had to do to save my life. But I cannot accept my “new normal.”

I think people use the term “new normal” because they think it will make us feel better. It’s as if the fact that many people feel this way or deal with these things makes them ok. But it isn’t ok. We live in a time where the advances of modern medicine are occurring at an astounding rate. We shouldn’t be complacent that these things are just our “new normal.” We can do better. We need to let our practitioners know that these post-cancer issues, while they may be common, are not acceptable and should not be considered normal. These issues are not simply things we need to learn to live with. They are the current reality for many of us, but perhaps if we all collectively stand up and say, “I am not ok with this new normal!” we will be heard and more research, time and money will be spent to make sure that the life of a cancer survivor isn’t so irrevocably changed that their entire sense of what is normal needs to shift. The things I am dealing with now are my current reality, but I refuse to accept that they are, in any way, normal.

Read more about my story here: https://cervivor.org/stories/ana/

Faith Over Fear

Today marks 17 years since I heard those words, “You have cancer“.  It has taken a lot for me to not be held hostage by cancer. You spend so much time fighting to survive and then the rest hoping, wishing and praying that it won’t come back. It’s like constantly living on the edge of a nonstop roller coaster. I got off of the roller coaster a few years ago and have been living my life beyond my cancer. I know that is not easy, but it is something that I truly strive for in my life. But, recently, I was taken right back to that moment in time when I was a scared 25-year-old.

Pre Op before the waterworks.

Two weeks ago I went for my annual well woman’s visit. You know, the one I constantly talk about because I’m a cervical cancer survivor. I honestly probably would have taken longer to make the appointment, but there was this issue with blood and it made me nervous. Anytime there is blood, is a reason to be seen. Especially, given my history and that my father died of colon cancer. So, I called and made an appointment and asked for their first available. My primary care physician recently retired and I also needed a new OB/GYN. So there was the added stress of not having a prior relationship. Oh, the excuses we will make… But this is not what I had in mind. I didn’t even do any research. I just needed to see someone. I was lucky that they saw me pretty quickly.  During my exam, with my feet in the stirrups; the Nurse Practitioner saw something. She called for a physician to come and take another look. As if I wasn’t anxious enough. There was a nodule of some sort and even though they didn’t think that it was cancerous, they needed to know for sure — given my history of course. So, I needed a biopsy. Nodule. Biopsy. Suspicious. All words that reminded me of when I was diagnosed with cervical cancer. I’d be lying if I said, “I was fine and took the news like a champ”. In that moment, I was terrified that the cancer had returned. In my head, “to finish what it had started“. I found myself overcome with fear and my faith nowhere in sight. This is a very human response. PTSD. It is cancer trauma. I haven’t been put under since my diagnosis and that triggered so many emotions for me. I wasn’t prepared for that. Let alone the emotions that ran through me as I was wheeled in the operating room. I was scared.

Cancer is scary. So much so that my blood pressure was through the roof. Just the thought of having to deal with cancer again was enough to have me in the fetal position. But just as I had done 17 years prior, I reminded myself that I wasn’t done yet. That if it were cancer, that I would fight to rid it again with everything that I had. Because I am not built to quit. Thank you cancer scare for that reminder.

So here I am less than a week post-op. My coochie feels like 2 bees are taking turns stinging it. But it could be worse. 17 years ago it felt like a hammer.  The waiting sucks. I have no patience at all, and I want to know my pathology reports now. But I have to wait. So, I’m healing and slowly easing back into what I do best. Living my best life beyond cancer.

My sister recently reminded me, “Faith Over Fear“.  When I find myself feeling overwhelmed I remind myself of that. I don’t want to let cancer, or even the possiblity of it control me. Here’s to celebrating 17 years cancer free and 17 more. FU cancer!

Also, let this serve as your reminder to schedule your well woman exam, vaccinate those under 26 (especially 11 & 12 year olds). Check your boobies, booty and skin too. Check everything. You’re welcome! 🙂

Tamika Felder is  is the Chief Visionary at Cervivor. Newsweek Magazine featured her on the cover and named her a “Cancer Rebel”. Tamika is a highly sought-after speaker and is the author of Seriously, What Are You Waiting For? 13 Actions To Ignite Your Life & Achieve The Ultimate Comeback.  Tamika’s inspiring story has been featured in numerous media outlets around the globe. Tamika has served as a community representative for the President’s Cancer Panel (2003), and is a former board member of the Ulman Cancer Foundation for Young Adults. She served as a patient advocate member of the Gynecological Oncology Group and the National Cancer Institute’s Gynecologic Cancer Steering Committee- Cervical Task Force. She is also a former member of the District of Columbia’s Cancer Plan’s Gynecological Cancer Committee and the Maryland Cancer Plan’s Cervical Cancer Committee. Tamika currently serves on the board of the Global Coalition Against Cervical Cancer, the advisory council for the Alliance for Fertility Preservation, and as an expert panel member of the American Society of Clinical Oncology’s Stratified Cervical Cancer Primary Prevention Guideline Panel. She was recently appointed to the National HPV Vaccination Roundtable’s Steering Committee. Tamika is making her survivorship count.